What It's Like To Live With Psoriasis

In 2000, Jennifer McMenamin, then 29, wasn't overly concerned when she developed a few itchy spots on her body. "I'd recently returned from traveling in Europe, and I just thought I'd gotten an infection," she recounts. After visiting several physicians, she got a diagnosis: a type of psoriasis called guttate, little red spots splattered like rain drops on her skin.

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McMenamin had never heard of psoriasis, and didn't understand the seriousness of having this chronic skin disease. Her nonchalance was reinforced when she became pregnant two years ago. "The spots went almost totally away by my sixth month of pregnancy. I was so excited, I thought I was cured," she says.

But she was wrong. There is no cure for psoriasis. Hers returned with a vengeance six weeks after she gave birth to her son, Otto, in January 2004. The trigger was most likely a beta blocker given to her to control pregnancy-induced hypertension. Today, the Carlsbad, California mom has psoriasis over the majority of her body, even her face. "It has been a surreal, life-changing event," she says.

Before, she and her husband were regular globetrotters, spending time in his native South Africa as well as in European countries. Today, McMenamin is more homebound, her skin so sensitive to environmental agents such as detergent that if she were to stay in a hotel, she'd have to pack her own sheets. "I just can't live a carefree life anymore," she says.

Coping in a Parallel Universe

Psoriasis sufferers often feel like they live in a parallel universe as they struggle to manage their skin disease while maneuvering the day-to-day demands of life, work, and relationships.

"Many people don't know what psoriasis is, and sometimes those who do, try to minimize it, referring to it as an itchy little skin disease. It's so much more than that," says 39-year-old Vickie Dowling, a San Diego-based research psychologist who was diagnosed with psoriasis at age 10.

Although her childhood bout of psoriasis was so severe that it kept her out of school for a month, Dowling's disease eventually went into remission. Then, at age 19, while at the University of New Hampshire, the disease returned and became so disabling she had to be wheeled onto a redeye flight to Los Angeles so that her parents could care for her.

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"I lost most of my hair, and my hands were so raw from the skin peeling off that my mother had to feed and dress me. It was traumatic and stressful, and I had no support except for my immediate family because I didn't know anyone in California," she says. And even her family's support was not quite enough. Dowling eventually joined a support group, which was a two-hour drive away. "They could understand me better than my family, even though most of them didn't have it as severely as I did."

Believed to be a genetic autoimmune disease, psoriasis is marked by inflamed red skin covered by white flakes, bumpy pustules, or long strips of agitated skin that resemble that of a burn victim. It generally appears on the knees, elbows, scalp, hands, feet, or lower back.

A glitch in the immune system triggers skin cells to grow at a hyper speed: Skin grows every 3 to 5 days, rather than the normal 30 days. When the body can't shed the old skin quickly enough, the skin piles up, causing red spots or blotches that are covered with white flakes.

Although it is not contagious, the highly visible spots take both a psychological and emotional toll on those who suffer from the disease. "They can get embarrassed, develop a poor self-image, and not want to leave the house because they don't want people to see their skin," says dermatologist David M. Pariser, a professor in the department of dermatology at Eastern Virginia Medical School in Norfolk. "Sometimes kids get kicked out of public swimming pools. Adults might get refused service in beauty parlors because of psoriasis on their scalp," he says.

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A quality of life study, co-authored by Steven R. Feldman, director of the Psoriasis & Skin Treatment Center in Winston-Salem, North Carolina, found that the psoriasis sufferers rated their quality of life poorer than other patients with serious medical illnesses, even some types of cancer.

"When people get cancer, family and friends rally around them," Feldman explains. "When you get psoriasis, everybody moves away from you." Even though the condition is not contagious, people are disgusted by the inflamed skin and fearful that they'll get it, he says.

Although psoriasis can ebb and flow throughout a person's life, the flare-ups rarely go away entirely. What triggers psoriasis—a cut, stress, the weather, certain medications—is very unpredictable. And to add insult to injury, the sores itch. A lot. "Sometimes I tell myself not to be vain, that it's just skin. But it's more than that, it's painful and itchy and a discomfort," says McMenamin.

McMenamin, whose original droplet-like spots have become larger and merged to the point that some lesions are four inches long and two inches wide, worries if her child will someday recoil from her. "I'm afraid that if I get to a point where I look like a burn victim," she says, "I'll look like a monster to him and he'll be afraid of me."

Yet her family and baby provide strong emotional relief as well. Both her grandmother and aunt live nearby. And caring for baby Otto helps distract McMenamin. "It's nice; I can get 100% absorbed with him if I don't want to think of anything else, and it fulfills me for the entire day.

Video: What is Psoriasis and the Best Psoriasis Treatment at Mayo Clinic

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